It Comes Back Around

[emmalily]

So I'm feeling kind of zen today and I wanted to let all of you moms and dads know.

I mean it, I feel pretty darn good. Not perfect, but it's getting there. I've recovered from whatever the blip I had in June was and I feel like I've come back a little bit stronger than I was prior to that.

A lot of the time I can't believe that at this time last year I had never even heard of PANDAS, and that's only been ten months. Not even, 9 months and 26 days.

I think probably part of this lovely zen feeling is just a natural growing thing (I'm going to be twenty in just a couple weeks, yay me) and I think part of it is my brain healing.

I leave the house now without even a thought that I'm going out. I leave alone. I drive alone. I still worry quite a bit when I have a scheduled commitment to keep but is not OCD worry, it's (as my PANDAS doc termed it) post-traumatic worry. He agrees that longer I see myself feeling well the more that will go away, and that as long as I don't make any regressive moves he thinks it's a perfectly sane reaction to the whole ordeal, and it's so very nice to be perfectly sane.

Weirdly, in the last two months, all my friends have suddenly come around on their own. Each has made some comment to me that they finally get it. I don't know how much they actually could ever get it but that they're taking these babysteps, so much better than a couple of years ago. I'm guess that just falls under natural growing for them, too?

I am studying again!!! I signed up for some self-study courses (not online classes, an entirely different idea) and I am so completely in love with my booklist, and my notebooks filled with notes, and even my headache-inducing literary theory text. It is very humanizing to get to do what I so love to do and what I have been held back from lately.

We are still getting me checked out for seizures and I'm guessing that'll be another couple of months before there's any solid answers there. But I see such a definite seizure-ish thing happening in my body during the rare days when I am having PANDAS symptoms that it really seems important to pursue all leads.

Also, I went back to my high school and spoke with my guidance counselor about PANDAS, partly so that maybe she'll spot it in someone else, and partly to kind of avenge myself, haha. It worked. She was so receptive and interested.

I've got some plans to go see some friends at their schools. Might take awhile to see the out of state one, but the instate, I'm so ready and excited for.

Oh, and I'm exercising. Yoga and walking. Definitely get tired easily, but I think I'm building up a bit. Definitely better than I was in the summer.

 

So that's my zen-ness. Remind me I've said this the next time I come across some strep and am cursing my immune system

[kimballot]

Emalily - Good for you!

 

My 15 year old daughter (non pandas) was just telling me today that she and her 13 year old brother (pandas) are really starting to actually like each other. She said "I wonder what is different"... I restated to her, again, that her brother is feeling well and this is the brother she was meant to have - not the one she has been surviving the last 13 years. I think it was rather zen-like for her also.

 

Glad to hear you are feeling the world is open to you. All almost-twenty years olds should feel that way!

[Worried_Dad]

Emmalily, your posts are so instructive and inspiring for us PANDAS parents, who observe the impact that this awful disorder has on our kids but can't really appreciate it firsthand. It's awesome to hear that things are improving and that you're reclaiming your life one step at a time!!!

 

Our son (14) is also continuing to heal. Still struggles with homework a bit, and has extreme light sensitivity, but that's about it at the moment. He does complain of feeling hot all the time and often feels very warm (almost low-grade feverish) to the touch. Craves cool temps, runs the fan even on cold days. Have you experienced this during your healing period?

[Kayanne]

Thank you for sharing this! I am so happy you are felling better!

 

I wish you the best of luck!!

[emmalily]

Emmalily, your posts are so instructive and inspiring for us PANDAS parents, who observe the impact that this awful disorder has on our kids but can't really appreciate it firsthand. It's awesome to hear that things are improving and that you're reclaiming your life one step at a time!!!

 

Our son (14) is also continuing to heal. Still struggles with homework a bit, and has extreme light sensitivity, but that's about it at the moment. He does complain of feeling hot all the time and often feels very warm (almost low-grade feverish) to the touch. Craves cool temps, runs the fan even on cold days. Have you experienced this during your healing period?

 

I was hot ALL the time until recently. Never wore a jacket, always had a hot forehead (no fever, just lots of heat rising), could swim for hours without getting cold. I had never connected that to PANDAS, but if your son is feeling it too I would bet there's something there.

[tired mom]

So happy to hear your doing soooo much better. It is nice to read something positive .

[peglem]

Emmalily, your posts are so instructive and inspiring for us PANDAS parents, who observe the impact that this awful disorder has on our kids but can't really appreciate it firsthand. It's awesome to hear that things are improving and that you're reclaiming your life one step at a time!!!

 

Our son (14) is also continuing to heal. Still struggles with homework a bit, and has extreme light sensitivity, but that's about it at the moment. He does complain of feeling hot all the time and often feels very warm (almost low-grade feverish) to the touch. Craves cool temps, runs the fan even on cold days. Have you experienced this during your healing period?

 

I was hot ALL the time until recently. Never wore a jacket, always had a hot forehead (no fever, just lots of heat rising), could swim for hours without getting cold. I had never connected that to PANDAS, but if your son is feeling it too I would bet there's something there.

Really? I've told doctor's that Allie "radiates heat" when they ask if she has a fever. Nobody knows how to read that symptom!